PERSONAL HEALTH; With Cancer, Treatment Is Only Part of the Picture

By Jane E. Brody

Published: November 22, 2005

More than 10 million people in the United States are cancer survivors, and their numbers increase daily. Many are considered cured. Some are still in treatment and one day may -- or may not -- be counted among the cured. Others are living with advanced disease.

But nearly all have similar needs:

A need to know about and cope with the physical and emotional consequences of cancer and its treatment, including current challenges to quality of life and delayed health effects.

A need to know when to worry and when not to worry about symptoms that could signal a recurrence or a new cancer.

A need for reliable information and assistance on matters like diet, exercise and smoking cessation that may improve survival chances.

A need to deal with employment and insurance problems related to their medical histories.

Such needs inspired a panel of the National Academies this month to call for major improvements in follow-up care for cancer patients, who are too often left to struggle on their own with serious cancer-related matters.

Making a Plan

''Successful cancer care doesn't end when patients walk out the door after completion of their initial treatments,'' said Dr. Sheldon Greenfield, director of the Center for Health Policy Research at the University of California, Irvine, who led the committee.

Patients need to have a ''survivorship care plan'' that provides information critical to proper long-term care, including the exact cancer diagnosis, a detailed list of treatments received and the potential consequences of those treatments.

''Cancer can be considered a chronic disease, in part because of the serious consequences and persistent nature of some of cancer's late effects,'' the committee said. This suggests that cancer survivors, like other patients with chronic diseases, need a plan for optimal functioning.

The committee's findings are spelled out in a 500-page book, ''From Cancer Patient to Cancer Survivor: Lost in Transition,'' produced by the Academies' Institute of Medicine and National Research Council. The recommendations were endorsed by the American Society of Clinical Oncology, which represents 20,000 cancer treatment specialists, but it could take years for doctors to carry out the measures nationwide.

For now, there are steps that cancer survivors can take on their own to enhance their knowledge and improve their medical, emotional and social well-being. If patients cannot do this for themselves, then someone who can serve as the patient's advocate -- a family member or friend -- should do it for them.

A friend who just had surgery for breast cancer asked me how she could improve her diet or exercise habits and what supplements she should take to ward off a recurrence. In advance of further treatments, she also wanted to know how her appearance and sex life would be affected, now and in the future, by the various choices of postsurgery drugs and radiation.

In the next 12 months, more than 211,000 women who learn they have breast cancer will face similar questions, but few will know how to get reliable answers.

Many will go through life feeling as if the sword of Damocles hangs over their heads. I recognize the feeling. Although I have every reason to believe I was cured of breast cancer six years ago, I do worry whenever I get a new symptom that I can't explain, like a pain in my ribs, a suspicious bruise, soreness in my breast. Could it mean my disease has recurred or spread?

Waiting for Warnings

I was never told what to look out for. Nor was I told that hardening and extreme sensitivity of breast tissue could be a lasting consequence of radiation therapy. How many breast cancer survivors now taking an aromatase inhibitor like Arimidex know that their risk of developing osteoporosis and fractures is increased as a result, and what they can do to reduce that risk?

When faced with a life-threatening illness, most patients readily accept their physicians' treatment recommendations no matter how dire the potential consequences. Only later do they wonder if something might have been done, say, to preserve their fertility or virility or to prevent lymphedema, chronic swelling of a limb after lymph node removal.

Patients have a right to know beforehand if surgery planned for head and neck cancer is likely to affect their ability to speak, swallow or breathe, or, for patients with prostate cancer, what their chances are of experiencing incontinence or erectile dysfunction as a result of surgery or radiation therapy.

It's not that knowing possible side effects is likely to prompt cancer patients to reject life-saving treatment. Rather, a prepared patient is better able to deal with such life-disrupting consequences. On the other hand, a patient who will gain only a short period of time from a debilitating therapy may choose not to be treated.

Writing It Down

At the time of diagnosis, through the course of treatment and after treatment is completed, patients or their advocates should come equipped to ask questions and record answers when meeting with their physicians. They should leave with a written record that includes these items:

The precise nature of the cancer, including its pathological type and stage, indicating its aggressiveness, scope and likelihood of spreading.

The treatments received, including the type and extent of surgery or radiation treatments, and a complete list of chemotherapeutic drugs and medications to prevent relapse, along with their possible long-term effects.

A monitoring program to check for the late effects of treatment, like heart damage, thyroid disorders or bone marrow disease.

A follow-up plan to check for a recurrence or the appearance of a second cancer.

A list of symptoms that might indicate recurrence or spread of the cancer.

Advice about diet and exercise that can help improve stamina and immune defenses and counter post-treatment depression, and referral, if needed, to a smoking cessation program.

A list of self-help groups for emotional and sometimes practical support, friendship and understanding of the problems of cancer survivors. The diagnosis of cancer often becomes a ''teachable moment'' -- a chance to persuade people to change habits that might have contributed to their disease or that may impede their recovery.

Many cancer patients and survivors continue to smoke because they believe it is too late to quit, but cessation of smoking can reduce treatment complications, improve survival chances and reduce the risk of a second cancer, as well as the risk of developing heart and lung disease.

Likewise, survivors should be encouraged to be active. An increase in physical activity enhances their vigor and vitality, cardiopulmonary fitness and overall quality of life and counters post-treatment depression, anxiety and fatigue.

As for unconventional remedies, the new report cites potential benefits from massage, imagery, relaxation training and participation in support groups, but notes that other measures, like phytoestrogens for breast cancer survivors on anti-estrogen medication, can be harmful.